New Here - Late diagnosis and Extended family acceptance

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Hi Everyone,

I am new here and have a DS who has finally received the right diagnosis at age 15 - ASD (Asperger's). My husband and I are so happy to have the right diagnosis, but I'm having trouble with explaining it to the extended family. DS's behaviour has been defiant and his obsessive interests have led him to steal and do other unacceptable things. He was bordering on a Conduct Disorder diagnosis when we had to arrange for him to live in a treatment residence a year and a half ago.

Now that we have the correct diagnosis and he is getting excellent treatment, we are starting to integrate him back into family life, but we have some extended family who are afraid to be around him and don't seem to accept the diagnosis. They seem to feel it is an excuse for his bad behaviour. I am not excusing the behaviour at all, but would like them to understand how the oppositional behaviour has its root in the ASD diagnosis.

Anyone have any experience or advice on this? I was thinking of sharing more information with the family - perhaps put together a collection of quotes from Attwood's books and explain how the behaviour was caused. It's difficult because there are so many preconceived notions about the diagnosis. I know, because I had them myself!

Thanks in advance for you support!
Cindy

Here is a link from the Autism Research Institute website, entitled "10 Things Parents with Loved Ones on the Autism Spectrum Would Love to Hear" that I found while researching a paper on autism in grad school. You might find it helpful as a starting point to share with your extended family members:

http://www.autism.com/index.php/underst ... ly_friends

After reading your post, I want to say first and foremost that your son is extremely fortunate to have an advocate in you. I was not so lucky. I was adopted as an infant, and provided for in every way except one: my parents never sought any type of professional help for me, even though it was painfully obvious I needed it.

I knew even as a kid that my particular behavioral struggles, and problems socializing and communicating were NOT something I could change on my own without the right kind of support. I did try desperately to change, and be like "all the other 'normal' kids," but it never worked.

As a teen--some very tough and lonely years--I begged my parents to seek help for me, but those pleas fell on deaf ears. So, I've spent a lifetime wondering what's wrong with me, stumbling through as best I could, getting help on my own here and there when I could afford it. In the process of trying to be a "normal" person, my self-image and self-esteem took a serious beating through the years.

Only recently, I was diagnosed (at age 43) as being on the Autism Spectrum. Even now, after sharing my diagnosis with my family, there is practically NO interest in discussing it. Autism is difficult for me to explain, so I have offered bits of information here and there, careful not to overwhelm anyone with too much at once. But no one ever asks any follow-up questions, or shows any interest in learning more. It is extremely discouraging.

Luckily, I married a kind and understanding guy (NT) almost 20 years ago. He does not understand AS all that well either, but he's trying, especially now that I am officially diagnosed. We have 2 beautiful, brilliant children that I love to pieces. I have a Master's degree in Applied Behavior Analysis, and a great job. So I have a lot to be thankful for.

But . . . it's been a VERY difficult path. Every day is still a struggle, sometimes enormously so. I am working on getting the support I need, now that I have the correct diagnosis, to truly live out my potential, and am excited about this new chapter in life!

My point is this: it didn't have to be this hard! Parents such as yourself are the greatest blessing a child with special needs can have!! I cannot over-emphasize this!! ! He cannot advocate for himself. YOU are his voice. It is not easy. But it is the right thing to do.

As a matter of fact, feel free to share this post with your extended family, or anyone who doubts or misunderstands your son's diagnosis. Perhaps they will appreciate your efforts all the more by reading the words of someone like me who could have benefitted from that kind of parental support as a youngster!

I am glad to hear your son is getting the help he needs! I wish you the best!

Jeanie

Jeanie, thank you for your post. It means more to me than I can express. We adopted our son at 9 months old from Russia and have been searching for an explanation for his behaviour ever since. I feel guilty all the time that I didn't catch it sooner, that we didn't get him the right kind of treatment, that I yelled at him too much. We've been in some kind of intervention or another since he was 5 years old and none of the professionals got it either, including a very expensive private school, and his amazing psychologist who worked with him one-on-one for 4 years! As a teacher, I should have thought of it sooner myself, but I was only ever exposed to very stereotypical presentations, and DS's is quite different. He did have an NVLD diagnosis, but the focus was much more on his academic challenges than on his whole-life challenges. Now that I'm educating myself, I'm kicking myself even more that I didn't catch it sooner.

Anyhow, what's done is done. I just want to move forward and see if I can get some of our extended family to move with us. Most are pretty open about it, but many are having a really difficult time with it. It's making me feel really sad.

Thanks again for your response!

My daughter is 6 and we have this problem. She obviously has autism too. It's so obvious at this point I have other parents of autistic children walk up to me and just start chatting away with me like an old comrade. I'm not sure what the implication is when family tells us it's a made up diagnosis and that she just has "Behavioral" problems.

Cinjos, I just wanted to jump in and say that I think you're doing a wonderful job. It's easy to look back and say I should have/could have/look at how much time we've lost/etc. It sounds to me, though that you did the best you could and actively sought for reasons and treatment - and that's a wonderful thing. At least now you do have the right diagnosis and can move forward. And remember that as a parent, you did a good thing to keep pushing.

Well said Odetta. Cindy, please try not to be so hard on yourself! As a parent, I know it's easy to do when it comes to our children. It takes trial and error to get to the root of most problems, but we can't find answers if we are not even looking! It doesn't help that autism is not fully understood, and autism services are so few and far between. It truly sounds like you are doing everything you can in a difficult situation.

Folks that brush aside your son's diagnosis have not walked in your shoes, so it's no effort whatsoever for them to minimize the issue, and just "blame the kid," which removes the incentive for them to educate themselves. You, however, are making a difference. I hope your family comes around (the ones that haven't). I am sure you would really appreciate their support! I would love to know if you find a way to "break through" to them.

Keep doing what you are doing for your son, and let us know how it's going!

Jeanie

Thanks for the support - I knew I needed to find a community of people who would understand. Even my friends who have been wonderful can't really understand. I am going to put together a mailing to email to my family and close friends to explain the diagnosis and how it fits for DS given his past behaviours. The difficulty that I have is that the family members who are unaccepting are actually trying to be loving, but they are making it so much harder on me. The truth is that I believe that they wish he would just disappear and then I would be happy and they would be happy. It's too horrible, really.

I didn't mention that I have 12 year old NT twins as well who are just the sweetest and most supportive siblings who are also having a difficult time and would benefit from having their extended family be more supportive. It's really just a hurtful time. The good thing is that it has forced us to be more inwardly focused on our nuclear family and that is great for DS. He thrives on things being simpler and calmer, and I am learning that I do, too!

I'll let you know what happens. Thanks again!
Cindy

Honestly, I wouldn't try to convince them. It can backfire, unfortunately.

Just stay strong and keep doing what you know is best for your family. Make sure the understanding relieves you of anxiety, not him of responsibility. Real life will show them and you will have little opportunities here and there.

Other than their support (which would be awesome, no doubt), is there anything you need from them that you aren't getting?

That's good advice - I'm worried it will backfire. I do want to just keep doing what I'm doing, and let it go.

The problem is that the family I'm having problems with is my sister's family and she is my only real family. We have always been incredibly close and our kids have grown up as very close first cousins, spending a lot of time together including long summers at a shared cottage. When DS's behaviour escalated, her kids were quite affected by it and when he went to live in the treatment residence, it was after a dramatic event involving them all.

My immediate family has worked hard to help DS and have been integrating him home on weekends, but he is not welcome in their home, nor does she want her kids to see him yet. She feels that she has exposed her children to too much already and is feeling protective of them. I had hoped that the diagnosis would help her understand him better, but she is more focused on the behaviour than on the explanation behind it. It's very upsetting for all of us, and my younger two DS's are feeling very sad about missing their cousins.
Everything was fine for a while when DS was only home for 1 overnight on the weekend and we would see them on the other night, but now we have him home all weekend.

I am just going about my life and doing what is right by DS, but it's very hard for me personally. I was going to send out the information to the whole family, including the supportive members, just to help them understand him better. I would just include my sister in the group.

I'm so sorry. That's got to be hurtful.

I have a nephew with a conduct disorder diagnosis.

Whatever caused your son to derail just before the residential treatment, in front of everyone, is pretty well burned into their memories. He's not 5, but I'm guessing 13 at the time. Even more scary for all involved.

Your son is going to earn their trust back. Unfair, but the stealing, and the other things he did can't be white washed over. My nephew isn't there at 18. He has zero impulse control, and attacks people. We visit there. I love him, but the constant worry of if "Mike" is going to steal, hurt our animals (has done in the past), and other actions is just too draining.

I know all about ODD/CD and FAS (jury is still out on that). I'm not saint. I suck. He's not allowed over.

Entertain at your home. Less stress for your son. Let people see him calm and content. Let him visit and have a place to hide out when overwhelmed. It's just going to be forced and weird at your sister's place.

I wouldn't send information. They know he has Aspergers. They can Google it or call you. People who care will ask or look it up, the others won't even bother looking at what you sent.

I love my nephew to pieces, I know why the way he is, but that doesn't make me feel any better when he's stealing stuff out of my kitchen drawers.

Hi,

It's so hard when people you love seem to be so obtuse about something so important. My in laws did not accept my son's diagnosis for a long time. I'm still not sure they have, but after 7 years they have finally moved from blatantly arguing with us to silence.

You could try offering resources, but they may not look at them. Only you can make the call about how far you're willing to go here. I did that early on too, but after a few years I got fed up with trying to convince people who obvious wanted to live in denial. Could you take your sister aside and acknowledge her trepidation about having her kids around your son? You could also bring up the needs of your twins and her kids, answer her questions, agree to disagree? I like the idea of having her over to your house when your son is calm.

Good luck.

Hi Cinjos,

I too have a daughter just recently diagnosed with mild ASD - aspergers and she is 13 years old. She has a twin who is having difficulty accepting the diagnosis, although she can be really sweet and helpful with her sister most days. I can totally understand about your family. My family took the diagnosis well and it certainly explained some of her quirks, but they are not eager to spend time with her either. Usually every Christmas my dad and my stepmom would invite us over for an overnight out in the country at his home, but my daughter's behaviour prevented any further invites because it was so hard to get her to sleep in a strange place and it took hours for her to settle down. Then last year, he did a potluck at my place. Now with the diagnosis, we didn't even see each other at Christmas. It is like they were too afraid of what she would do or something. But actually I was kind of relieved too because I didn't want her to have a meltdown in front of them either. My mom came over for thanksgiving dinner in October and she got to see how difficult my daughter can be. (She slammed her door so often, the doorknob broke) I almost want no one to see her like this because you feel like you should be able to get them to behave better. Like yesterday we went sledding with my boyfriend and on the way home my ASD daughter kept blowing in her twin's face and she was screaming for her to stop. It was so embarassing! I know now there is a reason for her behaviour and she isn't doing it on purpose, but it still feels awful when you can't keep her from annoying everyone.

Cinjos,
I feel for you - I think most parents here have had to deal with family that just didn't understand the diagnosis and what it meant - it can be hard to bring them around, and you may never get there - but that is their loss.

I also have a child with NVLD and while she is doing well now when she first got that diagnosis it was really hard to explain to my family - I finally told them that it is like trying to communicate with the world through Instant messaging - you don't get to see the face or hear the voice and there aren't any of those little emoticons - it is all about the words - that seemed to help at least some of them communicate better with her as she learned all of those non-verbal cues the rest of us just pick up naturally.

It sounds like the diagnosis may be fairly recent and it can take awhile for it to sink in too - traditionally autism was viewed as only severe and the idea that your child - someone who goes to school etc could have these issues may be hard to understand.

I know in my own family once I had the actual test results and could show them it also helped - though it still took awhile for people to learn how to interact effectively with her.

Good Luck and don't give up - you are the best advocate for your child and everything you do will make a difference.